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"e-Patients are Changing Healthcare": Public keynote at NI2016, Geneva


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NI2016 is the Nursing Informatics conference, in a different country every other year; this year it's Geneva, Switzerland. This talk focused on how nursing informatics can empower patients and families by sharing medical data.

Published in: Health & Medicine
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"e-Patients are Changing Healthcare": Public keynote at NI2016, Geneva

  1. 1. “e-Patient Dave” deBronkart Twitter: @ePatientDave How e-Patients are changing healthcare 1
  2. 2. How I came to be here •  High tech marketing •  Data geek; tech trends; automation •  2007: Cancer discovery & recovery •  2008: E-Patient blogger •  2009: Participatory Medicine, Public Speaker •  2010: full time •  2011: international
  3. 3. Important principle: “Patient” is not a third person word. Your time will come.
  4. 4. founder Tom Ferguson MD 1944-2006
  5. 5. founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
  6. 6. Pt of future
  7. 7. Me?An indicator of the future?? •  Who’s getting online: –  1989: Me (CompuServe sysop) –  2009: 76% of US adults online •  Who’s romancing online: –  1999: I met my wife ( –  2009: One in eight weddings in the U.S. met online –  2011: One in five couples met online
  8. 8. The Engaged Patient 12 items in my pre-appointment “agenda” email
  9. 9. The “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there’s something in your lung”
  10. 10. MultipleTumors in Both Lungs Where’s This From??
  11. 11. PrimaryTumor:Kidney
  12. 12. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
  13. 13. My doctor prescribed ACOR (Now:
  14. 14. ACOR patients told me: •  Welcome to the club. We know how you feel.
  15. 15. ACOR patients told me: •  This is an uncommon disease – get to a hospital that does a lot of cases •  There is no cure, but HDIL-2 sometimes works. –  When it does, about half the time it’s permanent –  The side effects are severe. •  Don’t let them give you anything else first •  Here are four doctors in your area who do it –  And one of them was at my hospital
  16. 16. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
  17. 17. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
  18. 18. “E-Patient White Paper”
  19. 19. “If I read two journal articles every night, at the end of a year I’d be 400 years behind.” It’s not humanly possible to keep up. Even when lives are at stake. Dr.Lindberg: 400 years 2013: 1100 years
  20. 20. The lethal lag time: 2-5 years During this time, people who might have benefitted can die. Patients have all the time in the world to look for such things. The time it takes after successful research is completed before publication is completed and the article’s been read.
  21. 21. “These conclusions are no more anti-doctor or anti-medicine than Copernicus and Galileo ..were anti-astronomer.” Patients can simply contribute more today than in the past.
  22. 22. Because of theWeb, Patients Can Connect to Information and Each Other (and other Providers)
  23. 23. Institute of Medicine – Sept 2012 382 page report:“Best Care at Lower Cost”
  24. 24. Institute of Medicine – Sept 2012 382 page report:“Best Care at Lower Cost”
  25. 25. Patient-Clinician Partnerships Engaged, empowered patients— A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.
  26. 26. Important question: Where does useful information come from?
  27. 27. Remember: People perform better when we’re informed better.
  28. 28. Hugo Campos wants his ICD data
  29. 29. Kardia (née“AliveCor”): Smartphone ECG
  30. 30. Hugo Campos @hugooc My first year with the AliveCor February 8, 2013
  31. 31. #OpenAPS & @DanaMLewis (Open SourceArtificial Pancreas System)
  32. 32. “Quantified Self” #OpenAPS Public Health conference San Diego,May 18 (n=1)*59(n=1)*59 June 3, White House: *75
  33. 33. “Your time will come” Mine did.
  34. 34. Withings Withings Wi-Fi scale Fitness wristband & heart band YMCA Diabetes Prevention Class (food training & physical activity) MyFitnessPal diet tracking app Strong support from my spouse My doctors can’t see this in their computers!
  35. 35. How can we empower patients and families to improve their health and their care?
  36. 36. Empowerment “Increasing the capacity of individuals or groups to make choices [about what they want] and to transform those choices into desired actions & outcomes” World Bank, 2002
  37. 37. ì
  38. 38. “How can patients participate if they can’t see what I see?” – Dr.Danny Sands
  39. 39. OpenNotes What happens when patients see their doctors’ notes?
  40. 40. •  99% of patients wanted to continue •  17-26% of doctors preferred not to… – But when given the chance to stop, none did •  85-89% of patients said availability of open notes would influence their choice of providers and health plans
  41. 41. Get Involved inYour Data. Quality Matters.
  42. 42. Pre-op:“At least you won’t be lopsided.” “What do you mean?” “You’re getting a bilateral mastectomy.” “No I’m not!” “That’s what came to us on this paper.”
  43. 43. Empowered families can help – if they have the information
  44. 44. Do you know what’s in your family’s records?
  45. 45. eHealth Law (2017) For patients: •  Free, voluntary EHR •  You define doctors’ access rights •  See all data on portal For HCPs: •  Hospitals: 2020 •  Retirement homes 2022 •  Cloud •  Intercantonal data sharing
  46. 46. Obstacle to adoption: “But patients don’t want this.”
  47. 47. Until people realize they have the power to ask, they don’t ask
  48. 48. We are at the start of a new cultural awakening.
  49. 49. Enabled by putting information in the hands of people who can use it
  50. 50. You know it’s a revolution when the artists and musicians show up.
  51. 51. How a kidney cancer wife found the info she needed •  No insurance; no treatment.Then: •  Three bad hospitals; no help.Then: •  A friend said “I know a guy... on Twitter”
  52. 52. TheWalking Gallery
  53. 53. “Gimme My DaM Data”
  54. 54. •  The French edition wants a publisher – contact @tinaburger in Lausanne
  55. 55. Impliquons les Patients! •  The French print edition wants a publisher! Contact @tinaburger in Lausanne
  56. 56. October 2007December 2006 May 2009 2.8 e-PatientYears in Pictures
  57. 57. “e-Patient Dave” deBronkart Twitter: @ePatientDave Let Patients Help improve healthcare 108